Proceedings of the Standing Senate Committee on
Human Rights

Issue 11 - Evidence - October 2, 2014

The Standing Senate Committee on Human Rights, to which was referred Bill
S-201, An Act to prohibit and prevent genetic discrimination, met this day at
8:04 a.m. to give consideration to the bill.

Senator Salma Ataullahjan (Deputy Chair) in the chair.

[English]

The Deputy Chair: Good morning, everyone.

Honourable senators, Senator Tannas has made a written declaration of private
interest regarding Bill S-201, an Act to prohibit and prevent genetic
discrimination. In accordance with rule 15-7, the declaration shall be recorded
in the minutes of the proceedings of the committee.

Welcome to the nineteenth meeting of the Second Session of the Forty-first
Parliament of the Senate Standing Committee on Human Rights. We have a mandate
from the Senate to examine issues related to human rights in Canada and abroad.

Unfortunately, our chair, Senator Jaffer, could not be here today. In my role
as deputy chair, I have the honour of welcoming you to our committee today. My
name is Salma Ataullahjan, and I represent Toronto, Ontario.

Before we continue, I would like my colleagues to introduce themselves.

The Deputy Chair: We're here to begin our hearings on S-201, the
proposed ``Genetic Non-Discrimination Act,'' a private member's bill introduced
by Senator James Cowan, the Leader of the Opposition in the Senate.

To begin our hearings today, I would like to welcome, from the Office of the
Privacy Commissioner of Canada, Daniel Therrien, Privacy Commissioner of Canada;
Carman Baggaley, Senior Strategic Policy Advisor; and Patricia Kosseim, Senior
General Counsel and Director General.

I understand that you have some remarks to present to us, and after that you
will be able to answer the senators' questions.

Daniel Therrien, Privacy Commissioner of Canada, Office of the Privacy
Commissioner of Canada: Thank you very much, Madam Chair and honourable
senators.

[Translation]

Thank you very much for inviting us to appear this morning in order to
express our opinion on Bill S-201, An Act to prohibit and prevent genetic
discrimination.

I would like to thank Honourable Senator Cowan for introducing this bill,
which addresses a very important topic. The protection of genetic information
has been one of our office's policy priorities over the past few years. In July
of this year, we released a statement on the use of genetic test results by life
and health insurance companies.

Our statement urges the life and health insurance industry to, and I quote:

[. . .] expand its voluntary moratorium, that currently calls on its
members to refrain from asking applicants to undergo genetic testing, to
also refrain from requesting access to existing genetic test results until
such time as they can be shown to be demonstrably necessary and effective.

Let us get back to Bill S-201. The legislation's overall objective is
consistent with our statement — it recognizes that genetic tests reveal highly
sensitive information, which merits special protection — but it goes much
further.

Whereas we have called on the insurance industry to refrain from asking for
access to existing test results until such a time as they can be shown to be
demonstrably necessary and effective, Bill S-201 would create an indeterminate
statutory prohibition.

The bill proposes to prohibit any person from requiring an individual to
undergo a genetic test or disclose the results of a genetic test as a condition
of providing goods or services to, or entering into a contract with, the
individual. This would apply to a broad range of organizations, including those
that are part of the life and health insurance industry.

[English]

As we note in our statement, individuals may undergo genetic testing for many
reasons. Testing may be for valid, clinically established medical purposes, but
people also get tested for research, to establish paternity, for family planning
purposes, to discover more about their ancestry or out of curiosity.

The insurance industry believes it needs access to all existing genetic test
results to ensure a level playing field in terms of knowledge between both
parties of a good faith contract. However, for the vast majority of genetic
tests, the ability to predict health and life outcomes with any reasonable
degree of certainty is still relatively low at this time. Even in the case of
rare monogenic disorders, for which genetic test results may be highly
probative, the economic impact of banning industry access to the smaller subset
of cases is currently the subject of healthy debate among qualified actuarial
experts.

Bill S-201 recognizes the overriding societal benefits of protecting
applicants' rights to privacy and of providing all persons with insurance
coverage regardless of their genetic heritage. We are also encouraged by the
government's commitment in the Speech from the Throne to prevent employers and
insurance companies from discriminating against Canadians on the basis of
genetic test results.

So I welcome the public debate that Bill S-201 inspires, but if legislation
is not forthcoming, my office would urge the insurance industry, patient
advocacy groups, the federal and provincial governments and other interested
parties to work together to come up with a non-legislative binding solution,
such as exists in the U.K., for example, to ensure that genetic information is
adequately protected and used only as appropriate and necessary.

That concludes my opening remarks. I would welcome questions from honourable
senators.

Senator Cowan: Welcome and thank you for your interest and involvement
in this topic and for your presentation this morning.

Your office has identified and taken the position that one's DNA is
qualitatively different than one's medical history. Can you explain how and why
you draw that distinction?

Mr. Therrien: Certainly DNA is extremely sensitive information and
deserves high protection. The reason for the distinction I may ask perhaps Ms.
Kosseim to explain.

Patricia Kosseim, Senior General Counsel and Director General, Office of
the Privacy Commissioner of Canada: The commissioner identified the
rationale behind our interest in the area of genetic information. It is based
predominantly on its sensitivity.

Senator Cowan: You have read the statement that the insurance industry
published last week.

Mr. Therrien: Yes.

Senator Cowan: Does that meet your concerns?

Mr. Therrien: There are positive aspects to this declaration and the
code that was published, for instance, in terms of the information that would be
provided to consumers in that area. But we note that the insurance industry
still believes that it needs access to all genetic results to achieve good faith
contracts, in their opinion. We still have concerns with that because we think
that at this time it is not something that would be necessary or effective. When
we look particularly at fundamental principles under PIPEDA, the legislation
that we administer, we think that there are difficulties with having access to
all genetic results.

Senator Cowan: My next question has to do with that. Perhaps you could
explain why you believe that the existing legislation does not provide adequate
protection for Canadians in this area.

Mr. Therrien: I'm not sure we have said that PIPEDA does not provide
adequate protection. Bill S-201 certainly would go much further than PIPEDA. Our
position so far has been to look at the requirements of the insurance industry
as against the current text of PIPEDA. It is with that perspective, looking at
the fundamental principle of PIPEDA, that organizations and companies should
collect information only when reasonable and when that information will be
effective in achieving a legitimate business purpose. That is when the
information in question should be collected.

It is that frame of analysis that we are applying under current law. It is
under that frame of analysis that we're suggesting to the insurance industry
that at this time, given the level of advancements in science, that they may
wish to abstain from requesting existing genetic results from potential insured
applicants.

Senator Cowan: Yet their position, which they issued last week,
clearly says that they will continue to do that.

Mr. Therrien: Indeed; and we have a problem with that position.

Senator Cowan: My point is that you would agree that the statement
issued by the insurance industry last week does not meet the concerns you have
identified as one of your priority areas.

Mr. Therrien: Exactly, yes.

Senator Eggleton: There's been discussion about the terminology of
predictive versus diagnostic genetic tests. Predictive means that it is in your
genes and a part of who you are, and so you may face some issues down the road.
Diagnostic is at the time an illness occurs. In addition to trying to determine
the basis of the disease, I suppose other information could be divulged in that.

The question is: Where do we draw the line in this, if we do? Some countries
apparently have put both predictive and diagnostic genetic testing into their
legislation. I am told that Austria, Belgium, France, Israel, Norway and
Portugal all do that. They don't make the distinction.

The industry says that the premiums would go up substantially if they don't
get this information. They feel they have to have this information. I don't see
why that would be, particularly in the predictive case, something that would
change the premiums because there hasn't been that much of it done to date. It
is still early days, I would think, in terms of these predictive tests being
plentiful. I wonder if you might comment on this matter of predictive versus
diagnostic, particularly in view of what the industry as told us at the last
meeting.

Mr. Therrien: If I may, I will address the question at the general
level and then ask Mr. Baggaley to complete my answer.

I will deal personally with the issue of the impact on premiums of a policy
of allowing or not allowing the use of genetic testing. You have heard from the
insurance industry and I believe from the Canadian Institute of Actuaries. Those
are certainly reputable organizations of the view that imposing a ban would have
that impact; but there are others who are of another view. That's why I said in
my opening remarks that there's a healthy debate between actuaries as to whether
imposing a ban would actually have that impact on premiums. I just note there
does not seem to be a consensus on this issue among the experts.

I will ask Mr. Baggaley to answer specific questions about the different
types of tests.

Carman Baggaley, Senior Strategic Policy Advisor, Office of the Privacy
Commissioner of Canada: You commented that several countries have included
both predictive and diagnostic in their bans or in their moratoria, and that's
correct.

The United Kingdom's moratorium applies only to predictive tests. That partly
explains the difference in the results we have seen from the CIA study that
predicted very significant premium increases. The study we commissioned
suggested that the impact on the industry would be very modest.

In a significant number of cases, people get a diagnostic test because
they're already showing symptoms and the diagnostic test is to confirm, as the
name suggests, a diagnosis. Since insurers have access to medical records, when
you apply for insurance, you have to consent to that. We're not suggesting that
they should not have access to medical records, nor are we suggesting they
shouldn't have access to family history. In the vast majority of cases, they
should be able to get the information that they need there.

We're primarily concerned with not just their access to predictive tests but,
beyond that, the vast range of tests that in fact tell you nothing about your
risk. The CLHIA position doesn't clearly say they can't collect information that
goes to your ancestry, which has nothing to do with risk. So what we're asking
is that the industry be much more nuanced in terms of the information they
request.

Senator Eggleton: Another thing the industry said was that they're
concerned that people will have these tests done — and here I am talking of the
predictive nature — won't disclose it, and then go out and buy lots of insurance
because they found out something that's in their history that may produce a
problem later on. They go out and buy tons of insurance. This bill, though, does
provide for an exemption for a policy in excess of $1 million that may pay a
benefit of more than $75,000 a year to try to stop that kind of thing from
happening. Do you have any comment on that? Do you think that's a sufficient
barrier to prevent people from going out and taking advantage of a situation the
insurance industry is concerned about?

Mr. Therrien: Here again, there are different views from experts on
what will be the behaviour of individuals with or without a ban. I have heard
that view through discussions with the insurance industry. In their view, people
will buy a lot of insurance after knowing the results of genetic tests. Other
experts that we have commissioned appear to be of the view that that kind of
behaviour would not occur. Again, there's a difference of views among experts on
that point.

Senator Eggleton: There is the exemption in this legislation that
helps curtail that kind of thing. Thank you.

Senator Eaton: Educate me. When it comes down to predictive DNA
testing, what is the impact of lifestyle on DNA? If I'm carrying a marker, will
my lifestyle change that? Can you give me a percentage?

Ms. Kosseim: I will try to answer your question in one of two ways,
and you let me know if I have addressed it.

We don't know the impact that a genetic test result will have on lifestyle
changes. Other people who research this question may be better positioned to
respond what the behavioural changes in terms of lifestyle would be on a
confirmed test result. Some may respond in a defeatist way or fatalistic way,
and some may change their lifestyle aggressively in order to try to improve
their health prognosis or risk.

If I understood your question in another way, in terms of the percentage of
influence that lifestyle may have on a condition versus DNA, that depends on the
condition precisely. Some are highly determinative based on the genetic marker
itself, monogenic diseases.

Senator Eaton: No matter what you do, you are going to come down with
it?

Ms. Kosseim: That's right. Those are the ones that are very highly
probative. The vast majority of common disorders are multifactorial where the
genetic marker is just one factor among many other lifestyle or health factors,
such as nutrition. Therefore, that's where the discussion and debate really
turns, on these multifactorial disorders, where the genetic test result itself
is not as relevant, certainly not necessary from an actuarial risk perspective,
because there are so many other conditions at play.

Senator Eaton: It is a very complicated issue. Obviously there's no
real answer.

Are there only really a few genetic conditions for which accurate tests have
been developed?

Mr. Therrien: That is our understanding, yes. The number may range,
again depending on the views of experts, but we're talking about very few,
perhaps between six and twelve or so.

Senator Eaton: Do you have a list of which ones are perhaps accurate?

Mr. Baggaley: There is a list in the study that was commissioned by
the Canadian Institute of Actuaries. They identify 13. They even attach
probabilities in that table. For example, they will indicate that if you have a
genetic marker, on average, what is the likelihood that you will develop a
certain condition? It is a sliding scale.

The one extreme, which is usually used as the most dramatic example, is
Huntington's, in which there is a very high likelihood that if one parent has
it, it will be passed on to their offspring and, if you have that, there is
nothing you can do in terms of lifestyle to prevent the onset of that disease.
That's the one extreme. Once you go from there, it tends to be a sliding scale.

At the other extreme, some of the direct consumer genetic testing companies
will claim that they can tell you that you have a 3 per cent greater risk than
average of developing a condition, so it really is a sliding scale.

Senator Eaton: Could you send us that list?

Mr. Therrien: Certainly.

Senator Eaton: Thank you.

Senator Andreychuk: You are talking about a sliding scale, but isn't
it based on the fact that we're moving very quickly in DNA testing? That is
still a very new field. Second, it is dependent on medical research. We're
finding out more and more about the conditions. When you say today there are six
to twelve, there may be more tomorrow, or different ones. We're in the middle of
some process with DNA, and we're certainly continuing, I think in dramatic ways,
and moving to learn more about these diseases and what may be the probable
causes. This is a snapshot in time, is it not?

Mr. Therrien: You are absolutely correct, which is why our statement
is prudent and recognizes that science will evolve. It says that, at this time,
it appears to us that it would not be appropriate for existing test results to
be collected by insurers, given the level of development of science to date.

In other jurisdictions, in the U.K., for instance, and other countries where
there is not a prohibition or a ban but a moratorium, the moratorium suggests or
implies that science may evolve, and the moratorium implies that there will be a
review that will evolve over time. In the U.K., the system is based in part on a
review by a committee of experts approved by the government that recognizes that
science will evolve and that what is not very accurate today may be more
accurate tomorrow or next year.

Senator Raine: It is a fascinating study, and one that needs to be
done.

I'm not familiar with insurance companies and how they work and if there is
existing legislation with regard to whether they must give you insurance and you
must disclose. It seems to me that when you have a contract there is onus on
both sides. Is it necessary that a person who is applying for insurance and may
have information that is not in their medical records or their family history
must disclose that when they apply for insurance?

Mr. Therrien: I will ask my colleagues to complete this, but what we
have from the insurance industry, from the association that was before you, is
advice to individual companies seeking to advise companies, ``Do not require
applicants to undergo genetic testing if they have not already done that.'' So
that should result in a certain outcome in terms of the behaviour of insurance
companies, but that advice does not apply to the collection by individual
companies of existing genetic test results. So the association leaves individual
insurance companies free, according to their own assessment of the situation, to
require, or not, existing test results before they accept to provide insurance
to a given individual.

At this point, given the advice given by the association to individual
companies, it may be that some companies will require applicants for insurance
to provide existing genetic test results in order to be insured.

Senator Raine: Where would they get these results?

Mr. Therrien: We're looking here at individuals who have obtained
genetic test results for any reason that we have referred to, either out of
curiosity, to determine ancestry or for other purposes. So the test has already
been done because the individual wanted to, not for insurance purposes. It may
be, under the current law and under the advice given by the association of
insurers to individual companies, that an insurance company will say, ``We will
not require a new test, but tell us,'' applicant for insurance, ``whether you
have undergone genetic tests before. If so, we want to see the results of that
test.'' So the test is undergone for reasons unrelated to insurance. But under
the current state of the law and policy, an insurance company could require an
applicant to provide the results of tests already undergone.

Senator Raine: I want to be clear here. If somebody gets a genetic
test done, the results belong to them.

Mr. Therrien: Yes.

Senator Raine: They are not in their medical records, which are
available to insurance companies. The results of genetic testing are kept
private. The genetic testing company does not have the right to give those
results to anyone unless the owner of the results, being the person tested,
allows them to. Am I correct?

Mr. Therrien: A company could first ask the potential applicant,
``Have you undergone genetic testing? If so, we want to see the results.'' So,
yes, at the starting point, we're talking about test results that belong to an
individual, which are under the control of the individual and may not have been
given to anyone else, including a doctor, potentially. However, the tests and
results exist, and an insurance company, as I say, could ask the applicant,
``Have you undergone these tests? If so, we want to see the results.''

There is no rule that prevents an insurance company today from requiring such
tests and, if the tests are not forthcoming, from refusing insurance to the
potential applicant.

Senator Raine: I would suppose that if you were in a situation where
you had undergone genetic testing and your genetic prognosis was very good, you
would have no issue with releasing that to the insurance company.

Mr. Therrien: Potentially.

Senator Raine: However, if you had information from genetic testing
that gave you knowledge of the future that you wouldn't normally have and you
might then refuse to give that to the insurance company, then they would refuse
to ensure you.

Mr. Therrien: Correct.

Senator Raine: I guess I look at it and say that it's kind of like
buying a lottery ticket and already knowing the answer, so you might buy a lot
more. It prevents the insurance companies being taken advantage of, if you like,
because one party of a contract has information that impacts what you're
purchasing. I think the crux of the issue here is to come up with something that
is fair to both parties in the contract. It's a dilemma.

Mr. Therrien: I will ask my colleagues to complete this, but,
obviously, here we're talking about the view of insurers that information that
applicants have should generally be given to the insurance company. That's the
good faith argument. For certain medical conditions, these genetic tests may be
highly probative, but, at this point in the development of the science, there
are very few. So for most genetic testing, the probative value of the test is
very low.

At this point, the insurance industry apparently wants to be able to assess
for itself, to have the genetic tests of any condition, whether the genetic test
is probative or not. The industry wants to be able to assess the probative value
of the tests or not.

We're saying that because at this point in the development of the science it
is only for very few conditions that these tests are probative, there should be
stricter rules. The insurance industry should require these tests in a much
narrower set of circumstances than they would apparently be able to do under
their policy announced just last week.

Senator Raine: Thank you very much.

Senator Cowan: Senator Raine, just to follow up on that, that's
precisely the point. Surely it's because many of the tests are not probative.
You have, on the one extreme, the Huntington's gene and then others that may
indicate something. There may be something that one can do to change one's
lifestyle that would reduce even further the risk of developing whatever the
condition it is. Is it not precisely for that reason that you're saying that the
limited scope of the insurance industry's policy does not go far enough to
protect the privacy concerns that you have identified in your position? Is that
precisely the point?

Mr. Therrien: Correct.

Senator Andreychuk: Just to follow up on that, we're talking about the
DNA testing and using those results, but there are a whole bunch of other things
that occur now so that you know your pre-existing conditions. You go and do it
unrelated to insurance, and you find out that you might be a suspect for
arthritis. When you go to get insurance and they ask whether you know of any
pre-existing conditions, you have to answer those questions. Why are you not
concerned about the privacy there, when you are on the DNA side?

Mr. Therrien: It goes back to the highly sensitive nature of the
information itself.

Ms. Kosseim, do you want to expand?

Ms. Kosseim: In essence, we need to go back to the first question. If
we're going to equalize the knowledge on both sides of a good faith contract, we
have to go back to the question of, ``What do you know?'' In the case of these
genetic test results, many are obtained in the context of a clinical setting,
with the assistance of a physician or genetic counsellor.

Given the increased accessibility of these tests, even over the Internet as
we read this morning, 23andMe will make available genetic tests for 108
conditions for $199. The question is: What relevance does that have from a
privacy perspective for legitimate business needs?

We always go back to that first question. We want to balance the right to the
privacy of individuals in a good faith contract with the legitimate business
needs of the industry. What we're questioning and challenging the industry to
demonstrate is whether or not the information is necessary and relevant for
actuarial purposes.

They may rise to the challenge and demonstrate that for a certain number of
conditions for which genetic test results are highly probative. Certainly,
individuals will be able to access the results over the Internet for those 108
conditions, but there are not 108 conditions for which access to that
information is necessary or effective at this time. We are urging the industry
to examine much more critically why it needs access to this information and to
demonstrate it. If we do that, we will whittle down from 108 conditions to a
much smaller set of circumstances where that information is actionable and
relevant from an actuarial perspective.

Senator Andreychuk: That wasn't my question. I'm not at this time
going to dispute your logic for picking out the DNA testing. But now you can get
other kinds of tests, not DNA, and end up with the same result. Maybe you will
get a condition genetically or maybe you will get it because you have a
predisposition. You haven't raised that as a privacy concern in this fair
balance. I wonder why you're putting the marker down with DNA and you didn't put
the marker down earlier with other types of medical testing that may or may not
be necessary for insurance purposes.

Ms. Kosseim: Thank you for reframing your question. For a lot of these
other conditions, it's fair to say that those are diagnosed in the context of a
physician-patient relationship, typically in a medical record where that
information and its relevance are taken in context in terms of the overall
health diagnosis.

In the case of genetic testing, what we're most concerned with is when you
get access to those test results outside clinically well-established contextual
conditions of the doctor-patient relationship, in another context where you
don't have that professional expert contextualization of the information. You
can get it directly over the Internet for multiple purposes, as we mentioned
several times.

You can also get it in the context of research, as you mentioned; and
everyone is supportive of the importance of research precisely for advancing
genetic science. Even the results in a context of genetic research will not
necessarily be as probative and may never make their way in the medical record
precisely because even researchers concede that they don't know yet the clinical
validity or utility of this information. They're still trying to figure that
out, so it won't have that same relevance from a medical perspective and may
never make its way into the medical record.

Going back to your example of the arthritis condition, all those other risk
factors, when they are contextualized in a medical doctor-patient relationship,
are fair game. It's when the non-contextualized information is obtained without
this assessment we worry about whether it's necessary or legitimate to collect.

Senator Andreychuk: If the DNA was in a medical context, you would
have no difficulty with it. You have difficulty with it if you get your DNA
testing for other reasons.

Ms. Kosseim: As my colleague said, we are not taking a position on
access to medical records, which is currently the case. We're not taking issue
with access to medical records.

Senator Eaton: Mr. Therrien, as the Privacy Commissioner you oversee
the handling of health information by insurance companies. Do you have enough
power to do that? Do you have everything you need to do that?

Mr. Therrien: The purpose of the statement we made was to indicate our
position on this issue with the basic principle under the existing PIPEDA that
organizations should only collect where it is legitimate and efficient.

There is authority for the Privacy Commissioner based on complaints
eventually if people were to be refused insurance. If the potential applicant
felt that the request made by an insurance company was inconsistent with PIPEDA,
the person could make a complaint, and we would review that complaint based on
our research and on the information we would obtain from the complainant and the
insurance company in question. I'm not without authority to look at this
question.

Senator Eaton: Could you force the insurance company to give the
person insurance?

Mr. Therrien: No, I could not.

Senator Raine: I want to go back to the concept of a good faith
contract. An evaluation of whether I give you insurance requires an
understanding of knowing what you know to be in good faith. If a person
withholds information from an insurance company and receives insurance on that
basis, knowing they had a precondition that they did not disclose, what is the
obligation? When that person becomes ill with a disease that they find out
somehow the person knew about, will that insurance be null and void because they
did not disclose?

I presume that there are different categories of disclosure for different
kinds of conditions. I want to find out what makes insurance null and void for
lack of disclosing genetic information.

Ms. Kosseim: I'm not an insurance law expert, but I think you've
raised the important question: If there is knowledge on the side of the
applicant that is not disclosed when asked, there is a risk that the contract
would be null and void.

What we're discussing here is whether the insurance companies temporarily,
permanently or by which form should even ask the question. We're challenging the
insurance industry not to ask the question at this time; and if they don't ask
it, then there is no obligation to disclose. We're looking at the question one
step behind and whether the question should even be put to the insurance
applicant. We're saying at this time that it shouldn't, in fairness.

Senator Raine: There is nothing currently stopping the insurance
company from asking, ``Is there anyone in your family with Huntingdon's
disease?''

Mr. Therrien: There is not.

Senator Raine: That has a genetic marker, I suppose.

What other probative genetic diseases could you ask about?

Mr. Therrien: As we've indicated, there is a short list of six to
thirteen conditions, which we can provide to you.

Senator Raine: I don't need that. There is nothing to prevent an
insurance agency from asking if anyone in your family has or do you know if you
have genetic markers for this, this, and this? You're limiting the questions to
only those diseases with genetic markers that we know about right now.

Mr. Therrien: Currently, there is no prohibition on an insurance
company to ask that type of question.

We're saying that because of the lack of reliability of these tests in
actually predicting whether the condition will materialize or not, it should not
be asked certainly when that lack of predictability exists. The number of
conditions is so small where tests are probative that we do not think that
asking the question is a necessary element for the insurance industry. The
advice we received from experts we have consulted is that this will not have an
important impact on the financial bottom line of the insurance industry at this
point in time. It could evolve. There could be many more conditions in two or
five years when tests would be more probative, and then we would have to
reassess.

Senator Raine: To me, it doesn't seem fair that one party could have
information that materially affects or could affect or change the odds, if you
like, when they're going into a contract. If that goes on, there will be harm
done to the other side of the equation and it could risk the ability to get
insurance for everyone.

Mr. Therrien: It is certainly conceivable for a small number of
conditions. For a small number of conditions, the tests have highly probative
value, and for those few conditions, you could argue that it would be reasonable
for the insurance company to ask for this.

The reality overall is that many medical conditions exist and for the vast
majority of them, at this point of the evolution of the science, genetic testing
is not reliably determinative of whether the condition will occur or not. It is
in that context that we're saying that, overall, even though a person may have
the results of a genetic test which indicates a higher probability of a certain
condition other than the six to thirteen, that test is not highly probative.

The individual has some information, but that information does not equate to
knowledge that the disease will actually materialize. Is that reasonable? Is
there an absence of good faith in giving information about the results of a test
which is not probative? We do not see that as being something that should be
disclosed and that would affect the good faith of the potential applicants when
the test is not determinative of whether the condition will occur or not. But
conceivably for the few conditions where tests are probative, the situation
could be different.

Senator Raine: Has the word ``probative'' been defined by the medical
profession or the insurance profession? To be on the list of probative
conditions, is that defined in law?

Mr. Therrien: I'm not sure if it's defined as such.

Ms. Kosseim: It's a relative term and it is expressed in percentages.
``Highly probative'' could be anything from 99 to 100 per cent certainty that
the condition will develop over the course of a person's lifetime. Probative is
expressed in terms of percentages, so it could range from 2 to 3 in some
conditions, up to 100 in others.

Senator Raine: Is there a line that insurance companies could use
where they say, ``Above this predictive level, it will affect us materially?''

Mr. Therrien: The likelihood of whether the test reveals a condition
that will materialize is not a black and white issue. It is relative.

Senator Raine: It's the job of the actuaries to try to figure it out.

Mr. Therrien: It's in part actuaries; it's in large part medical
evidence.

Mr. Baggaley: I think the question is this: Are there enough of these
conditions such that the impact on the industry would be dramatic? It really
depends on, and this is a subject that one can debate, how individuals would
respond if they have this information and the insurance company doesn't.

The actuarial study assumed that individuals would respond in a certain way.
When asked why individuals in Europe didn't respond this way even though we've
had a ban in place for 20 years, the response is, ``Well, the situation is
different in Europe.'' If individuals would respond in this way in Canada when
they have this information and insurers don't, the question is why individuals
in Europe haven't responded that way. That's the crux of the question.

Senator Cowan: I think you've answered most of my questions and
clarified one in response to Senator Raine. The point is that there is nothing
here that would prohibit or inhibit an insurance company from asking about
existing conditions that a potential insured would have — family history,
history of Huntington's or heart disease or cancer or anything like that. They
ask that information now, and there is nothing in this bill that would inhibit
their ability to ask that in the future. We're not talking about a condition
that a potential insured has. We're talking about the possibility or probability
that that person will develop that condition in the future. If they have the
condition at the moment, whether it's arthritis or cancer or Huntington's
disease, then obviously you have to disclose that information. We're not talking
about that, are we?

Mr. Therrien: No, we're not.

Senator Cowan: In Britain, where there is a moratorium, there is one
test or one condition — and I'm not sure about the correct terminology — which
is Huntington's disease. They are entitled to ask that question in Britain.

Mr. Therrien: That's the current state of affairs in Britain, yes.

Senator Cowan: There is a regulatory regime that would enable the
insurance companies to say, ``Medical science has developed, so we now want the
ability to ask about X.'' The regulators could say, ``Well yes, it's developed,
and we agree that now you can not only ask about Huntington's disease but you
can ask about this or that.'' It's a fact that although they have had this
moratorium in place for 14 years in Britain, the insurers have not felt the need
to apply for the right to ask questions about additional conditions. Is that
your understanding?

Mr. Therrien: That is our understanding.

Senator Cowan: One would expect that if the insurance industry in
Britain were being impacted by this, they would have said, ``Hold on here. We
now know that the probative value of this test is now sufficiently strong or
accurate that we want to apply to have that added to the list along with
Huntington's disease.'' The fact they haven't done that tells us something,
doesn't it?

Mr. Therrien: One would, yes, conclude that if the ban except for one
condition affected the industry's financial bottom line, they would have made an
application for more conditions to be tested.

Senator Cowan: Exactly, and they haven't.

Mr. Therrien: They have not.

The Deputy Chair: Thank you very much.

I would like to introduce our next panel of witnesses. We have with us Dr.
Yvonne Bombard, PhD, Scientist at the Li Ka Shing Knowledge Institute of St.
Michael's Hospital and Assistant Professor at the Institute of Health Policy,
Management and Evaluation of the University of Toronto; and Dr. Ronald Cohn,
Co-Director of the Centre for Genetic Medicine and Senior Scientist at The
Hospital for Sick Children and the Department of Pediatrics and Molecular
Genetics at the University of Toronto.

I understand that you have some opening remarks to present to us, and then
you will be available to answer the committee's questions.

Dr. Ronald Cohn, Co-Director, Centre for Genetic Medicine, Sr. Scientist,
The Hospital for Sick Children, Department of Pediatrics and Molecular Genetics,
University of Toronto, as an individual: Thank you very much for inviting me
to talk about my personal experience, as well as the experience of my
colleagues. Probably most importantly, thank you for taking the time to even
discuss this issue. It is very important and very critical to me personally as a
clinician. I'm also the Chief of the Division of Clinical Genetics at Sick Kids,
so what I'm going to talk to you about is the experience I have had over the
last two years when I moved from the United States and was recruited to head the
division. I will tell you that I was surprised how many different discussions I
had with families and patients about this issue of genetic discrimination, more
so than I ever had in all of my years of practice.

I have decided to give you three brief cases as an example, and the reason
why I chose the cases, as I'm going to present them to you, is that one is going
to address a predictive testing issue, which I think Senator Eggleton brought
up. There are things I would like to discuss as we go along.

One case is dealing with a patient who actually needed a diagnostic test, and
then I will tell you about our experience of a research study that is currently
looking at whole genome sequencing, which really is the test that is going to be
available, in my prediction, two to five years from now.

The distinction between a predictive and a diagnostic test is going to
disappear over the next few years. We need to address both of those.

The first case was one of my colleagues' — I didn't want to come here and
just tell you my own experiences — about a little girl with a father who has a
genetic condition that causes cardiomyopathy, which is a disease of the heart
muscle. It is so severe that the father is currently on the list to receive a
heart transplant.

The family came to our clinic because the daughter wanted to explore whether
she should do genetic testing. During the conversation, we discussed the issues
of genetic discrimination in Canada, and the family actually went to call the
industry and said, ``What do you think? Should I get genetic testing for my
daughter?''

The advice the family received was the following: They said, ``There's a
50-50 chance that this may turn out well, and, if she's negative and doesn't
carry the gene for this heart muscle disease, she will be insurable. You should
go ahead and do this test.''

The family came back to our clinic quite distraught, not knowing what to do
because it is a 50-50 chance. I will be honest with you, we actually counselled
them against testing at the moment and toward first trying to go through the
process of comprehending all of the information and the entire potential outcome
that testing could have on the child. The decision of whether they want to move
ahead or not has still not been made by the family.

I would like to point out here that the father was diagnosed not knowing that
he carried this gene. One day, he just fainted, went to the hospital and got an
ultrasound of the heart, and they found out he had a severe heart muscle
disease. If we knew whether this young girl had the disease, we could probably
prepare or even manage her well enough to at least prevent, for a very long
time, a heart muscle transplant. I don't want to tell you we could for sure, but
there is probably enough management available for such patients that we could
prolong her disease as much as possible. It will be a theme you will hear from
me until the end.

The second case is about a family I saw personally in my clinic where we
discussed the issue of diagnostic testing. Again, it was a 12-year-old girl who
came with features of what we call a connective tissue disease. It is a child
who was very bendable, to say in non-medical terms, had low muscle tone and had
a history of an ultrasound of a heart where not the heart but the main artery
coming out of the heart was slightly enlarged. That is a feature of two
prominent diseases. One is called Marfan syndrome, which many of you probably
have heard about; and one is called Loeys-Dietz syndrome, which is a rarer form
of a connective tissue disease but a very different and aggressive disease. We
recommended genetic testing for both of those because she didn't fit clinically
to meet one or the other. We told the family that the parents would have to get
tested as well, because there was a suspicion that the father also had a
slightly enlarged blood vessel coming out of the heart.

The father was very quick to understand: Well, if I do this and I don't have
life insurance and long-term disability insurance at the moment, I won't be able
to get it if I have the disease. So we had a long conversation about this. The
family still today, and it's been over six months, hasn't been able to come back
to me and do the test.

What is the problem here? Both of these disorders are life-threatening. One
you can treat quite well with the medicine, Marfan syndrome, while the
management for the other disorder, Loeys-Dietz syndrome, is vastly different.
Very often you have to perform surgery of the blood vessel early on to prevent
sudden death.

We learned about the disease several years ago that patients just dropped
dead with what we thought was Marfan syndrome, but we found out through genetic
scientific experiment that it is not Marfan syndrome but a much more aggressive
disease. The management for me as a clinician is vastly different. I can't
manage the child. In fact, I have the child come back frequently for echo
cardiograms of the heart to make sure that everything is in place until the
family decides to move forward and I know which disease I'm going to deal with.
That's a cost not for the insurance companies but for the health care system
that potentially could be avoided. It might not, but it could. I'm kind of stuck
in the situation.

The last example is that the technology is here and ready to sequence every
piece of our genome. This technology is not just technically ready but also
financially at a point where it is in part cheaper than many other tests we are
doing.

When I came to Sick Kids, we started a research study on whole genome
sequencing to children at the entire hospital, not just genetic patients in our
division but to the entire hospital, simply to see what we can learn and how we
can deal with the information. The distinction between a predictive test and a
diagnostic test is gone because you look for everything. It means that you find
something diagnostic for a patient who has a problem, but since you look for
everything, you find everything. You find secondary findings that then generally
are predictive in nature.

We asked 330 patients and their families to participate in our study. I would
like you to appreciate, please, that these are all families who have very sick
children. They all have children with a lot of medical problems. Over 33 per
cent declined to participate in a free research study because they were afraid
of genetic discrimination. I have to tell you that I find that an alarming
number. These families, in part, have tried to go through diagnostic odyssey for
years and years, and here I am able to offer them something that likely will
give them an answer; but they are declining because they are afraid of genetic
discrimination.

The last point I will make is that there were a few discussions, and I hope
we can have them, about lifestyle changes and so on. Many of the genetic
diseases we are dealing with don't have a magic bullet, as yet, with which you
can treat; and that's something the insurance companies are afraid of. As much
as we have made our strides and developments in diagnostic sequencing of the
genome, a whole new area is developing as of now, which I promise you will
provide treatments for lots of the patients in my clinic within the next 5 to 10
years. I'm convinced of this. You can ask other experts outside Toronto who will
agree with me. If I can't make a genetic diagnosis for these children, I won't
be able to design any of these individualized therapies that will actually treat
the primary genetic defect of many of the patients I see.

Yvonne Bombard, PhD, Scientist, Li Ka Shing Knowledge Institute, St.
Michael's Hospital, Assistant Professor, Institute of Health Policy, Management
and Evaluation, University of Toronto, as an individual: Good morning, and
thank you for the opportunity to provide some comments on what I think is a
landmark bill.

By way of background, I'm an interdisciplinary genomics and policy researcher
with expertise in genetic discrimination. My PhD focused on genetic
discrimination and I began my research career in this domain.

I was inspired to do my research after witnessing the difficulties and
challenges that individuals undergoing genetic testing for Huntington's disease
had been experiencing with securing insurance and maintaining their employment.
It was striking that my very first exposure was in the Huntington's predictive
or genetic testing clinic. My very first patient interaction was with an
individual who came back after genetically testing positive for the Huntington's
disease mutation, came back to discuss with a psychiatrist the challenges he was
having at work. After his supervisor had discovered his gene mutation status —
his predictive future increased risk for developing the disease while he was
currently asymptomatic — his job responsibilities started to shift.

At that moment, I was struck by the fact that the psychiatrist couldn't
advise him because there weren't any protections or avenues for recourse to do
anything about this. I remember that being a pivotal moment at the beginning of
my early graduate studies. I remember running to the bathroom at that clinic to
ask both my supervisor back in British Columbia and some legal experts in
Toronto at the time whether there were protections in place for this kind of
genetic discrimination. In fact, that became the reason I began the work in this
field. I began to study, on a national scale, the nature and extent of genetic
discrimination in Canada.

With colleagues across Canada, I conducted the first study that we have to
date to provide national evidence of the experiences and concerns of genetic
discrimination in order to provide evidence and to inform policy discussions,
such as the ones we're having today.

The national study was a cross-sectional mailed survey. The survey
questionnaire was based on qualitative interview work that I conducted across
the country, meeting with families that were at risk of Huntington's disease but
were not exhibiting signs and symptoms — were asymptomatic — in order to
understand and appreciate what genetic discrimination meant for them, what their
perceptions were and how it manifested in their day-to-day lives in order to
design an accurate survey questionnaire to measure the nature and extent and the
distribution of the issue across the country.

We targeted, through the survey, asymptomatic patients who were at risk for
Huntington's disease by virtue of the fact that one of their family members was
currently exhibiting signs and symptoms of Huntington's disease. We focused on
individuals who were asymptomatic so that we could target the issue of
genetic-based discrimination, being treated differently or unfairly based on
genetic information, as opposed to signs and symptoms of the disorder, which
could potentially complicate or confound the issue of genetic discrimination
scientifically in the way we are trying to address it.

We stratified our sample to look at both individuals who had chosen to
undergo genetic testing for Huntington's disease and those who were at risk for
Huntington's but chose not to undergo testing so that we could examine the
differential impact of genetic discrimination based on genetic test results
versus family history information. With collaborators in seven clinics across
the country, we were able to recruit our sample, which was participating in
ongoing observational studies or genetic testing.

What I found by interviewing these families across the country — and I'm on
the slide that says genetic discrimination is multifaceted — was, in fact, that.
Genetic discrimination, in the descriptions and the experiences of these
families, actually spans beyond insurance and employment. For the sake of
comprehensiveness, I wanted to run through those settings, but then will move
quickly into focusing on insurance and employment.

They spoke about, within the family, disruptive patterns of behaviours and
interaction and communication within the family that were perceived because of
them, based on their genetic test results. They also spoke — within the
insurance setting — that they were rejected life insurance, were asked to have
their premiums increased, their costs of their insurance policy increased
because of the genetic test results, and were actually asked by insurance agents
to undergo genetic testing in order to qualify for their insurance policies.

Within the employment setting, as I alluded to in my opening remarks, these
participants spoke about how they have had experiences of being under increased
surveillance at work because of their disclosure or because the supervisor found
out their genetic test results. They have also had promotional denials because
of their results or were, in their perception, imposed to retire early because
the results of their genetic tests were disclosed.

Within the social domain, people spoke about relationship rejection and
avoidance.

Within the health care domain, they spoke about experiencing altered medical
management and very directive counselling about reproductive planning from
medical professionals that they felt was a cause of their genetic test results
as well of the fact they're at risk for the disease.

Within the public policy or government domain, they experienced adoption
denial and difficulty in obtaining custody and access to children.

The next slide presents these issues and the distribution of these issues
among a nationally representative sample of this population. The study was able
to provide for the first time evidence that genetic discrimination was
prevalent, as 40 per cent reported having experienced at least one experience of
genetic discrimination. To put this into perspective, the cognitive psychology
or adverse drug reaction literature would define a common occurrence at around
the 10 per cent mark, so by all accounts this occurrence of genetic
discrimination of 40 per cent would be considered common.

When we looked at where the discrimination was being experienced and across
what settings, the insurance setting specifically was the highest area where
genetic discrimination was experienced, followed by the family and social domain
and employment. Notably, there were few reports there.

The next slide shows a closer snapshot of the results in the insurance
domain. Discrimination was most often reported to have occurred in reference to
obtaining life and disability insurance and, to a lesser extent, by mortgage
insurance.

There were areas in the survey where participants were allowed to write open
comments. I just took a few examples of their quotes. For example:

I was so angry because I was told I was denied [life insurance] because of
my gene.

This was a 28-year-old female from Alberta at the time who had had tested
positive for the gene mutation.

On the next slide, you see a closer snapshot of the employment setting
results. Here, genetic discrimination was reported infrequently, but when it was
reported to have occurred, it was most often reported at work, at their current
place of employment, as opposed to getting access to new employment. Here the
example from an open response in the survey was as follows:

I disclosed my positive result to my employer. Was denied a promotion, in
large part, because of the perceived future liability of the company.

This was at the time a 38-year-old male from Ontario who had tested positive
for the mutation.

Again, all of these individuals were asymptomatic, neurologically tested to
be confirmed as asymptomatic, and this was based on the disclosure of genetic
test results.

We looked at the results in terms of how knowing a genetic test result was
associated with the experiences of discrimination. What you find here is, in
fact, genetic discrimination experiences were highest among those who were found
to have the HD mutation. Then we looked at what the cause was for the
discrimination. We had the ability to discriminate, if you will, here between
experiences based on family history versus genetic test results. While family
history was one of the major reasons for discrimination experiences as perceived
and reported by this population, the genetic test results or both having genetic
test results and the family history were very much a major component of their
experiences.

Finally, we talk about experiences of discrimination being at this 40 per
cent level across the country within this population that we sampled, but the
fear of genetic discrimination was widespread: 86 per cent of the population
that we sampled reported that they were worried about genetic discrimination,
not only for themselves — and this comes to the heart of what genetics is about
— but for their families. Of course, when you have a genetic disease, your
family members are at risk as well, so therefore the risks of genetic
discrimination impact your family too. They were afraid of genetic
discrimination in the insurance setting, and here the employment setting is now
working its way up the ranks as well.

We speak about these experiences as if they're these abstract occurrences,
but they very much have impact on the psychological and behavioural well-being
of these individuals. We were able to look at that more closely through this
research. We found that genetic discrimination is actually associated with high
levels of psychological distress, such that experiencing genetic discrimination
in more situations is associated with increased levels of distress. Having the
fear or concern that genetic discrimination might occur to you or your family
members is also highly associated with high levels of distress.

What is notable here in the panel on the right about the fear of
discrimination and the high level of distress is that in fact it was more
concerning to be afraid for your family members than for yourself. This goes to
the impact of genetic discrimination. It goes beyond just me, myself and my
experience to what the family would experience as well and is at risk for
experiencing. This also may indicate some of the reasons why we don't see a lot
of reports of discrimination arising through potential legal recourse because
coming forward with an experience of genetic discrimination also puts your
family at risk and reveals a larger risk to the family. Here you are seeing that
impact through the data indirectly.

Finally, I wanted to touch upon how individuals were impacted behaviourally
by the potential for or experience of discrimination. They spoke about various
strategies they were using to manage the genetic discrimination. For the concern
of the discrimination, they used the term ``keeping low,'' that they were highly
secretive about the fact that they were either at risk for Huntington's disease
or tested positive for the mutation, not only with third parties like insurance
or employers, but even with their own family members and even children in order,
in their minds, to protect them from the chance or the likelihood they would
experience genetic discrimination should they be aware of the fact that they're
at risk and that there is Huntington's in the family, which of course has larger
medical implications, as we can discuss.

They also spoke about not changing jobs or not seeking new employment
arrangements just so that they could not be in a position to have to disclose
new information in the course of applying for a new job or a new insurance
application.

People spoke about pre-empting the possibility of genetic discrimination by
purchasing life insurance, in this example, prior to a diagnosis coming to bear
or prior to undergoing a genetic test, so those results don't necessarily need
to be disclosed at the time of the application. They actually spoke quite
emphatically about going to quite extreme lengths to make sure that their
genetic test results remain off of their medical files and charts across clinics
in Canada, wherever they're moving, and within their family's records so that
there is no link to their genetic tests in medical charts should insurers have
access to those medical files and discover that they have an increased genetic
risk because of their test results.

With regard to experiences, people spoke emphatically about the fact that
they had to minimize the experience since there was no recourse. They just had
to back down, avoid the confrontation, or ignore and accept the discrimination
experience. They spoke about trying to confront it in lieu of the vacuum of
policy protection that they were aware of or availed themselves of. They spoke
about challenging the person or institution, whistle-blowing, seeking legal
advice or trying to refute the basis of the discrimination experience.

To provide a quick summary of what I've said today and what I've found in
this research, the experiences of genetic discrimination are indeed common among
the Huntington's population in Canada. They are frequent, most frequent in the
life and disability insurance domains and among family and friends. The fear of
genetic discrimination is widespread among individuals and for relatives,
particularly within the insurance setting.

Both the experiences of discrimination and the concerns for being genetically
discriminated against are associated with high levels of psychological distress.
Patients, as I've just described, use various behavioural strategies to mitigate
discrimination, which could be to their detriment, as I have said about the
medical files. Having the genetic mutation is associated with higher levels of
genetic discrimination.

Just some limitations to keep in mind: These were self-reported, unvalidated
reports of discrimination. The sample could be considered self-selected because
they were participating in genetic testing or research, and as we know, the fear
of genetic discrimination causes individuals to avoid genetic testing and
participating in genetic research. By all accounts, one might speculate that the
prevalence I found in my study is actually an underestimate of the potential
fear and experiences, because those who are particularly afraid are not
necessarily coming forward for genetic testing or participating in research such
as this so that they won't be labelled and potentially linked to this disease or
genetic risk.

Of course, Huntington's disease might not be ``generalizable'' to complex
disorders, such as cancers. However, my collaborators in the Australian study of
genetic discrimination, which measured and used the exact same survey as I did,
found that the level of discrimination reported within the Huntington's sample
in their country was quite similar to the level of discrimination reported
within the cancer community's sample in their study. One could speculate that we
would find the same levels of discrimination within the cancer communities
should we do that research, which is very much required.

In conclusion, here are some considerations about the bill you have in front
of you. It represents an important contribution in addressing genetic fairness
in Canada such that it would allay fears about going forward with testing and
finding out whether one carries a genetic mutation, which could impact, as Dr.
Cohn has suggested, treatment and prevention, and participating in research,
which would have profound effects on the advancement of genetic science.

Penalties that are established within the bill, when enforced, can address
the experiences of genetic discrimination.

Fundamentally, Bill S-201 could advance complementary legislation by
provincial policymakers, which would protect against genetic discrimination
provincially. That would make a very important fundamental statement on genetic
fairness in Canada.

Thank you and I remain for your questions.

The Deputy Chair: Thank you for your presentation. I have a list of
senators wanting to ask questions.

Senator Eaton: Dr. Cohn, you made a reference to personalized
medicine. Gene therapy can also replace a person's mutated gene with a
functional one. Is that correct? Will we start to do that more and more?

Dr. Cohn: Yes, we will indeed. When I talked about the individualized
treatments available, I was specifically referring to the ability to now target
specific mutations in patients for treatment purposes. A technology has surfaced
within the last two years that has revolutionized the field. There are thousands
of scientists around the world who are trying to work toward this now. That is
exactly what I was talking about.

Senator Eaton: It's a very complicated field. So for an insurance
company to predict what's going to happen to somebody now, with the advances in
personalized medicine, will be more and more complicated. Would you not agree?

Dr. Cohn: Only in a beneficial way. It will be complex but in a
beneficial way because, most of the time, if I make a genetic diagnosis, we're
not talking about a predictive likelihood of disease. I would like to comment
about that because the point was made earlier. I can't do anything, and most of
the time that can lead to a life-limiting or life- threatening condition.

Senator Eaton: If you look at my DNA tests and there is a prediction
of something, you can't do anything if it's just predictive?

Dr. Cohn: That's different. I'm talking about the diagnostic aspects.
If I make a diagnosis of a current medical problem, very often, for the rare
diseases we are talking about, there is no available treatment.

What's different about predictive testing is that you actually can already
make certain lifestyle changes or management changes in your medical health care
to prevent any catastrophes from happening. So the discussion I had with the
insurance company when they came to us is that I actually think they will
benefit from this because the more we know, the more we can do, at least about
the things that put us at high risk. We can make certain changes to prevent them
from happening. That's exactly right.

Senator Eaton: Dr. Bombard, you represent a hospital I love dearly,
St. Michael's, one of Canada's great hospitals. As to your policy consideration
that Bill S-201 could advance complementary legislation by provincial
policymakers, are there any provinces in Canada that have legislation banning
the disclosure of or questioning of a person's DNA?

Ms. Bombard: My understanding is that several private members' bills
have been submitted, but at the moment there is no protection against genetic
discrimination specifically in any province.

Senator Eaton: Could you let us know which provinces have private
members' bills going forward? I think that a federal bill right now would only
cover a very small number of people. Am I correct?

Ms. Bombard: That's my understanding, yes.

Senator Eaton: Thank you.

Senator Cowan: Is it your understanding that there is a private
member's bill before the Ontario legislature? Are you aware of any others across
the country?

Ms. Bombard: There was another one, either in B.C. or Alberta. There
were several attempts in Ontario.

Senator Cowan: That's right.

Dr. Cohn, I was struck by your evidence today, as I was when we first met. As
adults, we're deciding for ourselves whether we want to take tests. Some of us
would want to know and some of us wouldn't. That's a legitimate decision that
each of us would make. In your practice, you are dealing with families who are
making decisions for children who can't make decisions for themselves. That
seems to me to add a whole level of complexity and stress to what in other cases
might be an individual decision.

Dr. Cohn: That is exactly right. I think the gravity of the decision
is much more pronounced because I see families saying, ``I'd rather not go ahead
with testing for my child because that could also have an impact on me. If it
has an impact on me and I can't get life insurance, how am I going to make sure
that somebody is going to take care of my child?'' The complexity and gravity of
that decision is multi-layered and much bigger than it is for a single person.

Senator Cowan: From a public policy point of view, can you elaborate
on the effects of these probative tests? The reliability is not the same for
every genetic test that one takes. Obviously, Huntington's disease is at one end
of the spectrum and other diseases are at the other end. In the type of work you
do, what is the value to Canadian society in having more information about our
genetic makeup? What does that do? What is your view of the impact if the
discriminatory effects that we're talking about were removed and it became
simply a question of wanting to know or not wanting to know? What effect would
that have on society, in your view? It's a very broad question.

Dr. Cohn: I would like to answer this by also answering a comment that
was made earlier: How many diseases do we actually know something about that
have an impact?

The American College of Medical Genetics has put out a recommendation that if
you are doing whole-genome sequencing, there are about 56 genetic conditions
currently that are what we call medically actionable conditions that you have to
report on. That's the rule in the United States. We have slightly different
rules in each hospital in Canada.

There are 56 medical actionable conditions, but there should be 58 because
two more were discovered within the last six months.

What's the value of this? I can do something about this in a way that my
quality of life is better. In some cases when you're talking about genes that
affect colon cancer or other cancer syndromes, it might affect your survival.

I'm coming back to what I said earlier. These medical actionable genetic
conditions will increase exponentially over the next year or two or three. They
will continue to increase because as we learn more, we identify more of them.

The number of genetic conditions for which you can't do anything will remain
very few. I'm trying to make the argument with the insurance companies that in
the long run they will save a lot of money because they will have fewer people
dropping dead at the age of 40 because they had a heart condition they didn't
know about; or they unexpectedly get colon cancer at the age of 50. You don't
expect to get colon cancer and die at this age. The knowledge is not just to
know but to have consequences in your health care actions.

Senator Cowan: I use Senator Andreychuk's example. Let's suppose that
Senator Andreychuk and I carry a gene that might lead us to develop a certain
condition. I decide I want to know. The gene is identified and I take the
measures that you have spoken about. But when I apply for insurance, I pay more
for my insurance premiums. Senator Andreychuk decides for personal reasons that
she doesn't want to know. Therefore, because she doesn't take the test, she
doesn't know she has the condition and she doesn't make the kind of preventive
lifestyle changes that I have made. But she pays a lower premium. I don't see
the public policy benefit of that. That doesn't seem to me to be reasonable.

Dr. Cohn: I can only say that I agree 100 per cent. I'm not sure what
else to say.

Senator Cowan: Senator Eaton said that federal law would have limited
impact or — I forget your term.

Senator Eaton: It would only affect a small number of people if the
provinces don't follow suit.

Senator Cowan: Exactly. Would you not agree that what we're talking
about here is with respect to insurance and this bill would protect all
Canadians equally. We might find that provincial legislators want to provide
complementary legislation, but this would apply equally across the country to
all Canadians, which is the reason I chose to do it. The amendments to the
Labour Code clearly are restricted only to those employees who are subject to
the Canada Labour Code. Would you agree with that?

Ms. Bombard: Yes, thank you for the clarification.

Senator Andreychuk: Thanks, Senator Cowan, for using me as an example;
but I'm the one who wants to know, as I'm very curious.

I find this fascinating, but what I find more fascinating about your research
is how fast it is. You said 56 conditions but two years ago it wasn't 56. This
is such a moving field that we really don't know where it's going. You're
exploring from a medical position, but the more we know about ourselves, there
are always consequences that may be positive or negative or unintended
throughout our law. So we're looking at this bill that is only part of the whole
issue.

I'm still a little confused. Insurance companies are concerned that if they
give a policy to somebody who has a disease or condition that you cannot assist
and improve, then they are setting themselves up for a certain scenario. If you
have that information, they want to know. They're not asking you to get
information, but if it exists, they want to know because you're coming to them
without disclosure if you don't let them know. That's on conditions that you
absolutely know are going to lead to a negative result.

However, they're all these other issues that you're talking about that you
can diagnosis. I don't think the insurance companies are looking at those now.
Do you know if that's correct, Dr. Cohn, from your conversations with them?

Dr. Cohn: No, the conversations I've had with the insurance companies
are different. They're looking at this globally. They make no distinction.
You're right in saying that for some of these conditions, you cannot do
anything, and the insurance companies are obviously concerned.

I think the bill addresses this eloquently by putting a ceiling on an insured
number to avoid or prevent people who know they have a terrible disease and want
to take out a $1 million life insurance policy because they would have to
disclose all the information. That's my personal opinion. I think that's a very
good part of this bill.

When I talk to insurance companies, they don't differentiate between the two.
They talk about all genetic information, not just the ones that have a clearly
negative outcome.

Senator Andreychuk: In those conversations, are they saying that they
don't care about any genetic predispositions that you say you can diagnostically
assist in improving?

Dr. Cohn: It never gets that detailed. It stops at the level of
available genetic information because that's what you're born with. The
multifactorial conditions develop over time. Genetics play a role in this but
it's not something you know. Whether I take your DNA today or at the time you
were born, it is always the same. They're talking about the fact that this is in
your DNA code, and whatever is in your DNA code is what we need to know. I think
that's where the problem is.

Senator Andreychuk: When you had these conversations, was it on behalf
of an association?

Dr. Cohn: They actually asked to speak at Grand Rounds at Sick Kids
because they knew that Senator Cowan was bringing this bill forward and they
wanted to engage in a conversation, which we all very much welcomed. It was a
very interesting conversation, for sure. I think it will only work and we'll
find a solution if we talk to each other and find a compromise that will be good
for all of us.

Senator Andreychuk: Will this turn into an ongoing dialogue?

Dr. Cohn: No. At the moment, I have been waiting for phone calls.
People told me they would come and speak to us further, and that hasn't
happened.

Senator Andreychuk: I understood that if that precondition was going
to be an actual condition that you will get, not perhaps, and it's predictive
that you will get it, then that's what the insurance companies are concerned
about, not the fact that you might have all these other conditions that might
have some negative concepts. The other thing is that if you have that gene, you
may or may not get it, and science has yet to tell us whether you will actually
have it. With Huntington's, we know you'll get it if you have the gene, and
there were a few others. I've been hearing from six to twelve or thirteen of
those. For the rest, you may have a gene and you might get it, and you might
have a predisposition for getting it more than the average person, but there is
not that predictive nature to it as yet. There may be, and it may be a growing
list, but science can't tell us yet. You're making no distinction.

Dr. Cohn: No, that's not true. I didn't say I don't make a
distinction. First of all, the insurance companies don't make the distinction.
They are talking about global genetic information.

What's important is there is a very small number of conditions that we know
about that can happen in the future and really have a negative outcome, meaning
these are life-limiting disorders for sure. There are very few of these, but
there are some.

To correct the numbers, we have now 56 genetic conditions where we can
actually do something about them. Are we going to 100 per cent avoid lethality
in these conditions? No. But the chances of avoiding lethality are much higher
with the knowledge than without the knowledge, because without the knowledge
it's going to happen for sure.

There is a third group of conditions, which is why we are doing the research.
What does it mean if I have a 15 per cent increased risk of Alzheimer's disease?
You are absolutely right that we don't know that yet. We are learning this as we
go, and time will tell, but there is a lot of information we do know already,
and obviously it increases exponentially.

Senator Andreychuk: I'm concerned about discrimination generally, Dr.
Bombard. You have touched on it, and I appreciate that very much. Life insurance
isn't something that every Canadian has. Sometimes they can't afford the
premiums. Sometimes it might be in your job package of benefits, but often it's
not. Those that can afford insurance are one category, but there is a whole host
of other people in Canada that don't have insurance or can't afford insurance.

Was your study on insurance, or was it on discrimination in the broader
sense? I'm concerned about if I get a test and if someone gets my records, as an
employer or in an association or anywhere, and it's used against me. I'm
concerned about that as much as I am insurance companies. This is where I think
this whole new DNA field will lead us.

Were you concentrating on life insurance, or was it really a broad analysis
of how discrimination might arise?

Ms. Bombard: Thank you for seeking clarification. I'm glad to have the
opportunity to do that.

The study asked specifically about discrimination and provided a list of 23
specific settings for the respondents of the survey across the country to mark
off in which setting they experienced discrimination. I grouped them in six
settings: insurance, employment, et cetera. Under insurance, there are specific
categories for them to indicate: life insurance, long-term disability insurance,
critical illness insurance and mortgage insurance. That's where I focused some
of my remarks to take a closer look in those settings.

The questions asked specific individuals to consider whether they experienced
discrimination in these settings. We provided a definition of what
discrimination means so that we knew we had validity in the results to know that
every respondent was interpreting that question and responding in that way to
suggest to us they understood what discrimination means. Part of the survey
looked at experiences of discrimination, and the other part that I presented was
regarding concerns for discrimination in the same 23 specific settings that were
then grouped in larger domains.

I would like to also have the opportunity to address your opening remarks.
Life insurance is not a social good. It's a business contract for those who can
afford it, and one could argue that it plays a desirable role. One could also
argue that it's becoming an increasingly necessary good, not only a business
contract but a need in order to equally participate in our society and get
things like a mortgage or open up a small business, or if you're a medical
practitioner or allied health professional, to provide some disability or
critical illness protection or even protect the practice. In order to
participate equally in our society, life insurance, which used to be a
commercial good, is starting to translate into something that is required in
order to participate equally in our society.

Yes, someone's current financial status might be one issue that could prevent
them from getting a large policy, but even access to a minimal policy by someone
who is at risk for a genetic condition and might have the financial means at
this point but is potentially prohibited from even accessing that good that
would allow them to participate equally in our society.

Senator Andreychuk: Thank you.

The Deputy Chair: We're almost out of time, but I have two senators
still wanting to ask questions. Please be brief with your questions and answers.

Senator Eggleton: It sounds as if this is really a good news story,
getting a genetic test. Some people would be reluctant to get one, but you're
saying that for the vast majority, you can do something about it if something is
found that needs attention, either medical therapy or lifestyle changes that
could have positive effects in terms of length of life or reduced health care
costs. It sounds like for the vast majority it's a good news story. The
difficulty is that people are reluctant because of this discrimination issue.

In this discrimination issue, Dr. Cohn, you said that 33 per cent, a third of
the people you've been dealing with, are declining because of the fear of
discrimination, and we focus on insurance but there is also employment. There
are other factors, as you pointed out, Dr. Bombard. This is very valuable, by
the way. Thank you very much for this.

Is 33 per cent roughly the number you're finding, Dr. Bombard, or do other
studies show figures different than that, people that are afraid and decline
because of it?

Ms. Bombard: This isn't the work that I have done. From literature, it
would be very consistent and it shows higher levels of declining participation
in research and in genetic testing because of fears of discrimination. I can get
the numbers for you, but I don't want to quote out of turn.

Senator Eggleton: I would be interested in more of that information
about the fear factor.

In your chart, you show the different forms of discrimination. We talk a lot
about insurance. It is the biggest one. What about the employment one? Is that
growing? What kinds of stories are you hearing about that? Are some employers
asking for genetic testing or asking people whether they had one and if they had
one that they want to have it submitted? Are we getting more of that?

Ms. Bombard: Within the employment setting, the survey indicates that
the discrimination experiences are happening at the place of employment because
the individual has decided that they have a perceived fiduciary responsibility
to report this information.

I remember interviewing a CEO of a company who said, ``I'm in a very
responsible post. I feel that, in X amount of years, knowing that this is coming
down the line, I have a fiduciary responsibility to eventually disclose this.''
That's a minority of the cases.

In other cases, the information is discovered. It is not necessarily clear
how, but that is leading individuals to, as some of the details here indicate,
impose early retirement, change folks' responsibilities at work, deny promotion
requests and actually increase job surveillance.

That is the nature of the experiences that are happening within that setting
and that have been reported, both in the interview work and within the survey.

Senator Eggleton: In what age range should people be taking or be
encouraged to take genetic testing? At Sick Kids, you are dealing with children.
Is there an age range that should be looked at?

Dr. Cohn: There is no age range that is recommended. It depends
entirely on the clinical symptoms, if you have any.

There are obviously information seekers out there — you talk about 23andMe
coming to Canada now — people like you and I, who are healthy and go out and
want to get some genetic information. I had my own genome sequenced because I
wanted to know.

I want to address the employment issue because I had to decide for three
stories. I want to add another situation where I had a brother, an adult brother
of a child with a genetic disorder, which we briefly diagnosed, and he told his
mother, ``Do not tell me what you have until I have my job because I was asked
questions about my brother. It was in a small town. They knew about it, and they
asked me specific questions about genetic conditions.'' He didn't want to get
tested and didn't even want to hear about it so that he wasn't in a situation
where he would say something.

Senator Eggleton: Thank you to both of you. You have been a tremendous
help.

Dr. Cohn: Thank you for having us.

Senator Nancy Ruth: I want to talk about risk and cost. Dr. Cohn, you
clearly said that if they don't get tested, the cost is borne by the taxpayer
through the health system. If they do get tested and insurance companies have
access to this information, should the costs not be borne by the shareholders of
the insurance company? Who is going to pay? Someone is going to pay for the
risk. Do you have any comments about that?

Dr. Cohn: I want to clarify that this was a comment about the one
patient story. I think we need to be very careful not to globalize this. That
was never my intention. There are certain conditions, like this one I was
talking about, in which, if I don't know the exact genetic diagnosis, it will
lead me a certain path. In this case, it was a path that led to more frequent
testing, which may or may not be necessary. I don't know the answer to that
because I don't know what the solution of this case is. That potentially could
also be a burden on the health care costs.

For fairness reasons, I need to make clear that in general, when you talk
about the whole genome sequencing, there is a certain perception, everywhere in
the world, that the more you know, the more you are going to go after things and
that it is actually going to be a burden on the health care system. One aspect
of our research study is to prove the exact opposite.

I think it will be the exact opposite, but I want to make sure that I don't
come across here wrong. At the moment, these are individual cases, and I don't
want to globalize this.

Senator Nancy Ruth: Someone is going to pay, though. The question is
where.

Dr. Cohn: Not necessarily. That's not true. Let me give you an
example.

If I have a patient who is diagnosed with colon cancer at the age of 50
because of a genetic condition but he didn't know about it, he will be diagnosed
at a stage that is going to lead to a lot of surgery, chemotherapy, maybe
radiation and lots of costs for the medical health system.

If I know at the age of 20 that this is going to happen, I will avoid the
cancer altogether and all of the costs associated with the treatment of the
cancer. That's why I'm telling you that our research will prove that the more
you know will actually lower the burden on the health care costs. So I would
like to respectfully disagree — not necessarily.

Senator Nancy Ruth: I'm talking about those who don't take the tests.

Dr. Cohn: What do you mean?

Senator Nancy Ruth: To use your colon cancer example, if someone does
not take the test and doesn't know that and then has all of these health
procedures, then the taxpayer is responsible for the costs.

Dr. Cohn: That's correct.

Senator Nancy Ruth: Somebody is paying somewhere. Is it the
shareholder of the insurance company if they were blocked from knowing the
knowledge, or is it the general tax pool?

Dr. Cohn: I apologize. That's absolutely correct.

Senator Nancy Ruth: It's okay. It is a moral dilemma.

The Deputy Chair: Thank you, Dr. Cohn and Dr. Bombard, for your
compelling testimony. That brings us to the end of this morning's human rights
committee. I thank you, senators.